Sunday, May 28, 2017

The "Normal" Versus The "Worthy" Autistic - A Response to "The Autism Matrix"

My autism seems to be a shock to anyone I meet. When I tell people I'm autistic, the most common response I get is "Really? I never would've guessed!" I want to believe that it comes from a well-meaning place of surprise, but I can't shake the feeling that it's slightly condescending to me. Autism affects people in different ways and yet we as a society seem to only accept a narrow affect as being truly autistic - you must either be a "quirky" personality easily fixated on certain subjects and have little to no understanding of basic social interactions or be completely non-verbal completely isolating yourself from people with little to no control over your physical actions. I'm neither of these things and seem to project a certain sense of "normal" where only the most attentive would identify something is notably different about me. That doesn't mean that my diagnosis is invalid, but rather I don't easily appear to be what people seem to think autism looks like.

Case in point, the Autism Society of San Francisco president Jill Escher recently wrote a piece for The Times of Israel (a Jewish Times subsidiary) attempting to make identifying how autism affects people "easier" rather than relying on problematic "functioning labels". In it, she maps out via a "matrix" where different autistic people would be based on things like IQ, social skills, verbal language, support needs, and more. The article has since been taken down from the Jewish Times from what I can assume was a barrage of angry comments disagreeing with Escher, but it still can be viewed on the Autism Society of San Francisco website here. There are lots of reasons why people find this "matrix" format troubling (my favorite pieces on it are written by my friend Christine and prominent parent advocate Shannon Des Roches Rosa), but I want to talk about one particular criticism that affects me greatly: the notion of the "worthy" and "needy" autistic.

Friday, April 7, 2017

Am I Thirty, Flirty, and Thriving Yet?

Come the 8th of April, I will enter my fourth decade on this planet we call Earth. The closer I get to that fateful day, I find myself thinking of the 2004 movie "13 Going on 30". In that thirteen year-old movie (ha), an awkward burgeoning teenager wishes she could be "thirty and flirty and thriving" and through the power of magical realism finds herself in a future thirty year-old self only to find what she wants as a teen isn't all that's cracked up to be. It's never been a movie I particularly enjoyed, but as I get older, the theme of wanting something for your future self and ending up in a place you didn't expect has been especially relevant to my life. What I wanted as a child didn't pan out and what I have now leaves me wondering how I got there and if it's the right place for me.

I guess you could say that as a kid, I too hoped I would be "thirty, flirty, and thriving". And while I didn't quite get what I wanted as a kid, maybe I ended up with something better.